First - so many thanks for all the supportive comments when I posted yesterday, you lovely people. You really helped me clarify my thoughts and go into today's appointment in a positive frame of mind.
The outcome was a mixed bag, which I am going to have to reflect on in the coming days and weeks.
My rheumy said he felt my auto-immune symptoms were as well controlled as he could possibly hope for. So no change in treatment there - just continue on hydroxy and low dose prednisolone.
He felt my most troublesome symptoms - extreme fatigue and the hot flush/shaking/nausea episodes were indicative of fibromyalgia rather than directly related to the autoimmune stuff (the first time fibromyalgia has been suggested as a diagnosis). So he's put me back on amitriptyline to improve my sleep, given me the usual bumpf about CBT and graded exercise, and said, "let's see what comes out of your neurology referral".
He hoped that "in a year or so" there might be an improvement in my functioning.
Writing that out now, I feel a bit deflated. It seems a bit like, "welcome to your new normal" rather than the active fightback I was dreaming about.
But maybe it's good - after all, he could have said, "Aggh! Your auto-immune problems are going nuts! I'm booking you a bed in ITU right now!"
*Cue "Life of Brian" chorus - 'Always look on the bright side of life etc etc...'